Infantile Spasms SIG


Leadership: (name/email)

Group leader: Daniel Shrey, MD – Children’s Hospital of Orange County (

Group coordinator: Virginia Allhusen, PhD – Children’s Hospital of Orange County (


SIG Objectives:

  • Identify and study gaps in our understanding of infantile spasms – a rare, multifaceted, and often devastating disease.
  • Improve the health and quality of life of children with infantile spasms and their caregivers by improving their early identification and effective treatment.


Current Projects and Collaborations:

      Working document on Google Docs (click here)
  • Evaluating the ideal time to assess for first line treatment response for new onset infantile spasms
  • Treatment disparities – their causes and effects in children with infantile spasms
  • A national study of multi-modal biomarkers and their predictive power for children with infantile spasms
  • Corpus callosotomy as an effective treatment for refractory infantile spasms


Plans for Future Projects:

  • A machine-learning approach to outcome prediction in children with infantile spasms
  • Variability in second-line treatment of infantile spasms – causes and effects
  • ISITT2 clinical trial assessing the effectiveness of dual therapy for infantile spasms


Upcoming meetings:

Second Thursday of the month at 9am PST/12pm EST. Meetings: 1/14/21 and 2/11/21.



(updated every 6 months, names +/- emails)


Name Institution Email
Adam Numis UCSF
Archana Pasupuleti Children’s National
Asim Shahid Rainbow Babies
Chellamani Harini Boston Children’s
Christopher Yuskaitis Boston Children’s
Cindy Keator Cook Children’s
Daniel Shrey CHOC/UCI
Debopam Samanta Arkansas Children’s
Emily Spelbrink Stanford
Erin Fedak-Romanowski University of Michigan
Ernesto Gonzales UCSF
Fiona Baumer Stanford
Jason Coryell Oregon Health Sciences Univ
Jason Lockrow Seattle Children’s
Jennifer Cohen Connecticut Children’s
John Millichap Lurie Children’s
John Mytinger Nationwide Children’s
Jun Park Rainbow Babies
Katherine Nickels Mayo Clinic
Kelly Knupp Colorado Children’s
Liu Lin Thio Wash Univ St Louis
Matthew Sweney Utah
Mike Ciliberto University of Iowa
Patricia McGoldrick Maria Fareri-Boston Children’s
Rani Singh Atrium Health
Renee Shellhaas University of Michigan
Shaun Hussain UCLA
Sookyong Koh Emory
Steven Wolf Maria Fareri/Boston Children’s
Sunil Naik Penn State
Tracy Dixon-Salazar LGSF/CZF
Zach Grinspan Cornell